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Tuesday, July 17, 2012

`You're thinking about something, my dear, and that makes you forget to talk. I can't tell you just now what the moral of that is, but I shall remember it in a bit.'

"'Perhaps it hasn't one,' Alice ventured to remark. "'Tut, tut, child!' said the Duchess. 'Everything's got a moral, if only you can find it.'"- Lewis Carroll, Alice in Wonderland, Ch. 9

Today, it has been two years since receiving
that ill-fated dose of Levaquin. I haven’t
posted in a while; I have been trying to use this time to reflect on how my
life has changed, and to find my new role in life. At times, I feel so consumed by it all, I wish I
could run away and just hide. While other
times, I feel I have embraced what has happened. I have dealt with chronic illness for six years
now, first with my daughter's epilepsy, and now my Quinolone Toxicity and peripheral
neuropathy. Having been a
healthcare provider as an Occupational Therapist, I have insight from all three
perspectives; as a caregiver at work, a caregiver in the home, and now as the
care receiver. I will
say the latter, has taught me the most. The
following are valuable lessons I have learned dealing with chronic
illnesses from all three points of views, especially the past 2 years. While a few of these will be familiar from
previous blog posts, others are new. I don’t necessarily always remember these
lessons, and I probably need to review them myself at times. This list is a stream of consciousness. I thought it would be short, but it kept
growing. I would love to hear from you. What lessons have you learned?

___________________________________________________

Make doctor appointments
on Mondays or early in the week. On
Fridays everyone in the office is ready for the weekend, including the
doctor. He may not be as focused on you,
but more focused on his weekend getaway.

Make appointments
first thing in the morning or first appointment after lunch, this will reduce
your wait time.

Bring something to
read, in case you could not get the first appointment.

Ask your doctor how
he is doing. He probably doesn’t get
asked this much. He spends all day
listening to other people constant complaints, and probably very few have asked
him about his day.

Fire your doctor if
he is not working with you, you feel he does not fully listen, or you don’t
trust his decisions.

Always make a list of questions you have for your
doctor. In such a short amount of time spent with him you will more than
likely forget something.

Educate yourself
about your diagnosis. Knowledge is power
and you can have a much more meaningful conversation with your doctor if you
know all of the medical terms, treatment options and available testing. Read books, research online, talk to others
with the same diagnosis.

Take notes or have someone go with you to take
notes.

Keep track of all medical information. Get copies of medical records from all of
your doctors.

Have doctors share information. Make sure
all tests are forwarded to all your doctors with a summary note. This will
help stop duplicate testing.

Be prepared to
fight insurance. Insurance will always
say no the first 2-3 times, but be persistent.
They are hoping you will give up, that is what they are counting on. I found a well worded letter can still do the
trick.

Research what medication
you are being prescribed! Ask the nurse
what they are injecting into your IV before
they do it.

Medication can help
with pain, and don’t be afraid to use them.
But proceed with caution!

Know you are not
alone; 1 in2 people have a chronic illness.
Find support groups even if they are online. People you meet online can sometimes be your
best support.

Remember most of
the people you meet in online groups, are the ones that have not yet gotten better. Those that have improved usually are no
longer actively posting.

Share your story,
so others can learn from you. Through
sharing, you may receive advice, a doctor suggestion, or an idea you have never
thought of before, that may make a difference in your health.

The Internet is not
always right.

Educate your family
and friends if they are willing to listen.

Realize not everyone
is going to “get it”. Some will always
think it is your fault; it is due to too much stress, lack of faith. You have to learn to move on, and not get
stressed that they don’t understand. Find people that do understand.

It is NOT your
fault that you are suffering from a chronic illness, or any illness for that
matter. We are human and are susceptible
to all kinds of diseases, human error, or accidents. Instead of asking why me, ask why not
me? We will all get something, at some
point.

No one experiences pain the
same, and how it affects a person depends on their lifestyle and
responsibilities.

It is o.k. to
cry…you may even have a pool of tears.
Grieving for your former self is normal.

Watch for signs of
depression.

Focus on what is
“right” with you.

Write a
journal. Mine is online, but yours
doesn’t have to be. It is a good way to
help with frustrations and anxiousness.

Be positive,
surround yourself with positive people.
Avoid negativity. That will not
help you get better.

Ask for help.

Rely on your church,
friends, and family for support. They
want to help.

It is hard to
accept help!

In helping others,
send cards, make a phone call, send an email, bring food in disposable
containers, it is ok if you don’t know what to say. Don’t be embarrassed that you have waited too
late to call. Any time is better than
not at all.

Teach your kids all
household chores; you never know when they will need to help because you are
unable to do it.

Remember, your
family is going though this as well. It
is not just you affected by the chronic illness. Not all of them will react the same way.

If you are having a
bad, crabby day….warn your family, and then go to your room!

Get a temporary
handicapped hang tag, even if you never use it. At least that option is there if the situation
arises.

Use the handicapped
space when you need it.

Don’t abuse your
handicapped tag. If there is a close
space that is still reasonable for you, save the handicapped space for those
who need it more.

Don’t be ashamed to
use assistive devices.

Get outside of your
comfort zone, test yourself, you may have gotten better and not know it. Take a trip!

Pace yourself,
don’t overdo it.

Plan your day, allow
extra time than normal incase fatigue hits.

It is o.k. to do
nothing. Take a nap.

Get help in the
home, if your are able.

No pain, no gain no
longer applies for exercise. Slow and
easy wins the race from now on.

Eat healthy.

Plan out your
weekly meals: Ask friends to prepare
meals that can be stored in the freezer for future use. If your husband travels, have him grill extra
chicken before he leaves to be used later in the week. If you are having a good day, make things to
stock in your freezer for when you are not feeling well. Use www.emeals.com
for food planning, and your grocery list.

Chocolate cake is
perfectly acceptable for your kids for breakfast.

Pets can be the
best comfort. They are good listeners
and don’t give bad advice.

Beds can go unmade.

Read something NOT
related to your illness. Take a break
from it.

Listen to uplifting
music.

Crow a little.

Be grateful!

Sing!

Laugh!

Pray!

LIVE!!

“One day at a time--this
is enough. Do not look back and grieve over the past for it is gone; and do not
be troubled about the future, for it has not yet come. Live in the present, and
make it so beautiful it will be worth remembering.” - Ida Scott Taylor

Sunday, March 11, 2012

The day finally came; I had my appointment to review my results with Dr. K. I wasn’t expecting much, because I had received copies of my reports prior to meeting with her. I had seen for myself, nothing seemed to be jumping out as real problems. The only thing that appeared odd was that I was low in 18 of my amino acids in the urine test. I was hoping this would be important in some way. However, I was told that this was not of significance and can vary throughout the day. That was frustrating to hear to say the least. My buccal swab test was normal for Complex IV and for the Complex I, it was .1 below the normal range. Again, this is not significant. The buccal swab test is only 82% accurate. I knew this when entering into this way of testing, but I wanted to try the least invasive way. Buccal swabs cannot test for Complex II and III of the mitochondrial chain. It is only a screening test.Non-invasive evaluation of buccal respiratory chain

Dr. K basically said the next step is a muscle biopsy, but I
refuse to do it. The reliability rate for that is also low. She
stated that she knew people who have had 3-4 biopsies, all of which have come
back with different results. I feel for me, there is not enough true
benefit to do it. Yes, it MAY perhaps
give me a “name” of what has happened, but she would not treat me any differently. The
risks however, far outweigh the benefit in my personal opinion. I feel my body would not handle an invasive
procedure like that very well, and it is still a high possibility the test
would tell me nothing. She still
believes that Levaquin was "toxic" to me, and that it probably did
damage my mitochondria, just no proof of it. She wants to retest me in November, a year
after my first tests, to compare the results. Perhaps later down the road, I will still
choose to do the biopsy, but for now- NO.

So, to put it briefly, this is what my current doctors
“think”: Dr. K- mito toxicity from the
Levaquin, but can’t be proven; My neurologist, peripheral neuropathy (small and large
fiber) confirmed by testing and a possible myasthenic disorder, which has yet
to be proven; Rheumatologist, not a rheumatological problem, he believes it is
all neurologically related. All 3 have
mentioned mito as the underlying cause. All 3 agree Levaquin caused my current
problems.

I have decided that Levaquin is the perfect perpetrator of a
crime. It leaves no evidence behind,
just the damaged body. What makes it
more frustrating is that it can be totally invisible. To others, I look “normal” even healthy to
some. I have had comments even within
the fluoroquinolone community, that I look “healed”. I would think, they of all people would know
how you look on the outside, can be deceiving of how you feel on the
inside. Very few see me on days where I
cannot get dressed because of fatigue and pain.
When people see me, it is because I am having a better day, and I still
want to look my best. Just because I put
on make-up, wash my hair, does not mean I am healed. It is the double edged sword of an invisible
illness.

Fatigue is still one of my most limiting factors. I have two
types: Central fatigue, meaning my
overall energy level is decreased to the point it can be debilitating. The
second is muscle fatigue, where my muscles cannot maintain performance in an
activity, especially repetitive ones. They become
sore, weak, and shaky causing me to stop what I am doing. Driving, unloading dishwasher, folding clothes,
washing hair, stairs, even stirring a pot of food are just a few examples of what can be a problem. You can imagine
this makes it difficult for me to feel I have much of a productive day. Some
disorders cause both, some disorders may only cause one of these types of
fatigue. It wasn't until I read this article did I realize how complex the
problem of fatigue can be to medically solve.
Fatigue in neurological disorders

I have been taking my "mito cocktail" of
supplements now for 3 months and it has helped my central fatigue significantly. I now feel like I can get up and do
something. However, nothing seems to
help the muscle fatigue, so that continues to be a limiting factor. I introduced each supplement slowly, so to be
aware of any problems each may cause. The
supplements that were suggested to me by Dr. K include:

L-Carnitine 330 mg , 3 times a
day (this is prescription strength)
Alpha Lipoic Acid 300 mg
twice a day
Coenzyme Q10 600 mg a
day
B2 (Riboflavin) 100 mg a
day
Creatine 5 grams a day

So far, so good, the only supplement that she suggested that
I have not begun is creatin.

I have had many emails, some asking if I believe I will be
healed. The answer to that question is a
difficult one, nor do I think it can be answered with certainty. I will admit, since my 2
year mark is fast approaching, I am becoming less hopeful. However, I am so much better than I was those first 6 months, and for that
I am verythankful. I am learning to adapt my life, to accommodate
for the symptoms I have been left with.
I drive with hand controls; I take frequent rest breaks; I leave the
heavy household duties for others in my family; I don’t over plan my day; and
if I am feeling wiped out, I make sure I rest.

"Would you tell me, please, which way I ought to go from
here?"
"That depends a good deal on where you want to get to," said the Cat.
"I don’t much care where--" said Alice.
"Then it doesn’t matter which way you go," said the Cat.
"--so long as I get SOMEWHERE," Alice added as an explanation.
"Oh, you’re sure to do that," said the Cat, "if you only walk
long enough."(Alice's
Adventures in Wonderland, Chapter 6)

When I started this blog, I thought it would only be for a year. I would document my journey, what I did to
get better, and then wrap it up with success.
That has not happened yet. My voyage
has taken me down paths I did not intend.
I have become an advocate in the fluoroquinolone community, a
co-moderator for one of the largest online support groups, began volunteering
for www.saferpills.org,
and work daily to help others who are just now starting their own journey
through an adverse reaction. Is this the
life I had planned? Certainly not, but
who does have that kind of life which they planned, with absolutely no bumps or
detours along the way. The best I can
do, is make the most of what I have now.
So, for now, I will continue with my daily “cocktail”, keep advocating,
and take one day at a time. For you
never know what healing a day can bring.

Friday, December 9, 2011

As promised, I have an update from my visit with Dr. Kendall, a mitochondrial specialist. In my last post, my husband accused me of writing for Wikipedia, saying it was pretty boring. Well, it is sort of hard to make Mitochondrial Disease sexy and exciting, but I will see what I can do.

I really like Dr. Kendall and I definitely feel I have come to the right
place for answers. She strongly believes
I have Mitochondrial Disease based on my own medical history and that of close family
members. She said I have too many “red
markers” for Mito to ignore it. We are going forward with the extensive
testing, which includes a buccal swab test for mtDNA and blood/urine
tests. We have opted not to do the
muscle biopsy (a common diagnosing tool) at this time. We both would rather avoid something so
invasive, since my body has had slow healing time after other minor
injuries. There are currently 1500 genes
involved in the mitochondrial process, and with current technology, only 40%
can be studied. She stated that no
matter what the test may or may not show, she has no doubt I have Mito, and the problems could very well lie in the 60% of the genes they can not yet study. I could possibly have both forms of it,
genetic (based on family history) and toxic (caused by the Levaquin). The combination of the two may explain why I am no longer making
improvements. During her exam, she also reconfirmed dysautonomia and
gastroparesis. I am to have a gastric
emptying study to learn more about the gastroparesis.

In our further discussions, she asked me a little about the FQ
support groups in which I am involved. I
gave her an overall synopsis of the symptoms people seem to suffer after an
adverse reaction to a Fluoroquinolone Antibiotic. She has seen others affected by Levaquin, and
said for the most part; those with “true” toxic Mito seem to improve. She has however, seen a few that seem to get
“stuck” in their recovery for whatever reason.
She does believe that in general, those that have a Mito toxic reaction
to medications most likely had a genetic mutation which allowed the medication
to affect them. There are varying
degrees of this problem, so I would assume that would account for the multitude
of ways people are affected.

So, in a nutshell, I have been diagnosed with Mitochondrial
Disease. It will take until March to get
all of the labs back. There is no cure,
especially if there is indeed a genetic component. However, there is treatment to help encourage
the cells to function at their maximal potential. In the meantime, I will start on the “Mito Cocktail” once all labs have been drawn.
It seems this cocktail varies person to person with which supplements
are used and the amount given. I am sure
mine could change based on what the findings are.

I do believe I have found my
answer to why Levaquin affected me the way that it did. I don’t necessarily
think this is true for everyone who
has been affected by FQ antibiotics. I have always jokingly said that my family would make a great medical research study because of all the rare disorders present. I think in a way, this is what my testing may in fact do. In
this process, I could also be inadvertently helping other family members get long
awaited diagnoses. I am sure I am just beginning to learn what
all this diagnosis will entail for me.

I
will periodically update my blog to give the status of how the cocktail is
going, and to also let you know what my labs indicate. I can’t promise I will do it often. I just haven’t had the energy for it
lately. I realize I did not follow through
with my promise at the beginning of this post.
So, for my husband……Once upon a time, there was very sexy, exciting mitochondrion
that was stalked by a dark, deadly Fluoroquinolone Antibiotic…….Well, you know
the rest.

Monday, November 14, 2011

I have been away from my blog for quite a while, and I have had several emails requesting an update with how I am doing. (see my symptoms list for an update). This blog post focuses on my next steps in my journey to hopefully more healing, the investigation of the mitochondria.

Mitochondrial dysfunction has been resurfacing time and time
again among the online groups and discussions with my doctors. What is mitochondria? The mighty mitochondria is the “power house” for our cells, without them our bodies cannot function at its optimum. Mitochondria are organelles in our cells that convert nutrients into energy for our bodies and are responsible for 90% of cellular energy. When they are malfunctioning, they can cause a “brown out” of any or several body systems.

I have avoided being tested for mito dysfunction, because
of the dreaded muscle biopsy. However,
I have continued to research this theory, and several discoveries have made me finally
pursue this possibility:

First, I have had 3 doctors mention mitochondrial dysfunction
to me, and each independently recommended a muscle biopsy. I
certainly have not wanted to undergo something so invasive. So, until now, I have put this request to be
tested on the back burner. It has now
been almost 1 ½ years since my last reaction to Levaquin. My pain has greatly reduced, and I no longer
require anything for pain. It still
resurfaces occasionally, but the pain is bearable without the use of
medication. However, the muscle fatigue,
digestive problems, exercise intolerance, autonomic dysfunction and
fasciculations have started to increase again.
These all still interfere considerably with my quality of life. Multi-system problems, muscle fatigue and
exercise intolerance are the hallmark symptoms for mitochondrial dysfunction.

Second, my family history also has me wanting to research
this further. Disorders that run in my
family (Parkinson’s, epilepsy) have been linked to mitochondrial disorders. I think it is possible for me, that I had
mitochondria that perhaps where not functioning at their optimum, and Levaquin
“did them in”, so to speak.

Third, MitoAction.org has several interesting podcasts that
possibly support this hypothesis. One
titled “Drug Toxicity and Mitochondria” actually discusses Fluoroquinolones
that have been found to cause mito dysfunction.
(Minute mark 52)Trovafloxacin, a fluoroquinolone antibiotic, was found to
cause mitochondrial damage and was withdrawn from the market. The speaker then proceeds to say, that once
one medication in a drug class has been found to cause mito dysfunction, it is
safe to assume others in the same class will do the same. That is enough for me.

Fourth, I have found that one of the top docs for
mitochondrial dysfunction is very close by; I could not pass this opportunity
up. Dr. Fran Kendall is the medical adviser for
MitoAction.org. She is on the cutting
edge of research and does much of her testing through buccal swabs and blood
tests first. She has found that muscle biopsies
are less than 30% accurate in diagnosing mitochondrial dysfunction; therefore,
muscle biopsies are the last resort for her practice.

Dr. Kendall sent me a packet to complete that wanted
everything, including the kitchen sink.
She wanted a detailed description of family medical history going all
the way back to my grandparents and their siblings, medical records and of
course my own history. I sent the
80-page packet of information to her, which she will review before seeing
me. Despite having an appointment with
her, I am still not certain that I will actually be tested for mitochondrial disease. It depends on a lot of factors: what Dr.
Kendall thinks, how I feel about her after our first meeting, and testing
involved. I do feel it is at least worth
this first step in the investigation.

What happens if I do get a diagnosis for mitochondrial disease? Mito-toxicity from medications is thought to more
than likely improve. I guess the big
question would be, “Do I have both genetic and toxic mitochondrial
disease?” There is no cure for genetic
mitochondrial dysfunction; however there is treatment to allow your body to
function at its optimum. These include
diet, exercise and a “mito cocktail” of supplements. I know this is what many are doing now in the
FQ toxicity world, but for me, I am tired of haphazardly taking supplements
without knowing what will or will not truly help me. Guidance in this area would be greatly
appreciated.

Perhaps, this is the reason some seem to improve after their
adverse reaction. Suppose the theory
that FQs damage mitochondria is true.
Could it be that those with a "pure" toxin induced disorder
are the ones that improve? Could it
also be that those of us that don’t heal, had an unknown subtle dysfunction before,
and this has made it worse? I wonder if
that is the difference between those who get better, and those who don't. Bear in mind this is MY theory, and none of
it is based on fact. I am curious to
hear Dr. Kendall’s views on Fluoroquinolone antibiotics and the mighty
mitochondria.

Monday, September 12, 2011

The theme for Invisible Illness Week is Deep Breath, Start Fresh. How can you take what you have learned with a chronic illness and move forward, continue to live your life? My first thought on this: I have to forget my past, forget the life I once had and plow ahead. I shouldn’t dwell on how easy it used to be to do my daily duties as wife and mother. This is the here and now, and I can’t look back.

There are so many references in leaving your past behind,
just Google it and you will see. So it
MUST be the right thing to do, right? Who could forget the scene in The Lion King between Pumbaa and Timon, when trying to convince Simba of this.

I have
been struggling with this concept.
Which past do I put behind me?
The pain-free, energy-filled pre-Levaquin days, or the 14 months of
recovery post-Levaquin? The truth is I
can’t forget either one. I can’t forget
the part of me that enjoyed singing, traveling with my family, being involved
with my kids activities, being the “fix-it” person of our household, being a
mother and a wife. That is who I was and
still am, even though these things no longer come easily. I also cannot leave behind those I have met
in this horrific journey of my adverse reaction. Many people I initially met are still
suffering, and daily I meet those newly affected. I can’t turn my back and pretend these people
have never come into my life. Can I
somehow move on, and yet still embrace a little bit of all of it?

In the Alice in Wonderland movie, the Mad Hatter
complains to Alice, “You’ve lost your
muchness.” Then as he points to
Alice’s heart, “In there, something is
missing”. The Mad Hatter points out to Alice that she
has lost who she used to be, her true essence.
She has lost the things in her past that make her Alice. She later has to reclaim her “muchness” to
slay the Jabberwocky. As in Alice, at
the end of TheLion King, Simba is reminded by the Great Spirit,“Remember who you are!”He realized that his
past, even though gone, was instrumental in his present self. Without this knowledge, Simba would not have
been able to win back his family’s pride.

A big part
of my past was singing in my church choir.
This past week I dug down deep into my soul and found a part of my
“muchness”. I went to choir practice for
the first time in well over a year.
Every joint and muscle in my body hurt after that 1 ½ hours; but I will
not let Levaquin take this part of my past away from me. It is a part of who I was, and still am. It is a part of my true essence. After 14 months, I think I deserve to get
this part of my life back. I have
decided it is time to start doing this in other parts of my life as well. I have to win back my “family’s pride”.

Why do we
have to leave our past behind? Aren’t
we also taught that the past is who we are?
That we learn from our history? I
think the answer may be a little bit of both…remember who you really are, regain your muchness, find your true essence, but then take a deep breath and
start fresh.

9. The hardest part about nights is: I am
beyond worn out and the electrical zaps from the neuropathy.

10. Each day I take4pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have not tried many
myself. However, the use of Silver-thera
socks for my neuropathy and physical therapy together have allowed me to go medicine
free.

12. If I had to choose between an invisible
illness or visible I would choose: Hmmmm, neither.

13. Regarding working and career: I was
fortunate to be a stay-at-home mom, so I did not have to worry about trying to
maintain a job. However, being a mom is
job enough with a chronic illness. I
needed a lot of extra help and support for the first 6 months, until I could
gradually start taking back my normal “duties”.

14. People would be surprised to know: It
was caused by an antibiotic, Levaquin. (Fluoroquinolone Toxicity)

15. The hardest thing to accept about my new
reality has been: I can’t be as active as I once was. Things tire me out much more quickly and cause muscle and joint pain.

16. Something I never thought I could do with my
illness that I did was: Start a blog, and become an advocate for others affected
by this medication

17. The
commercials about my illness: There are no commercials about what I
have. Most doctors will not even
acknowledge these severe adverse reactions from Fluoroquinolone
antibiotics. Fortunately, my doctor
does. This makes the community of thousands that are affected by these meds,
feel even more alone. However, more and
more medical evidence is being published.
A recent article in The Annuals of Pharmacotherapy supports the
fact that Levaquin can cause this.

18. Something I really miss doing since I was
diagnosed is: Camping, hiking, white water rafting, and exploring nature
with my family.

19. It was really hard to have to give up:
my independence and role as CEO of our household.

20. A new hobby I have taken up since my diagnosis
is: Blogging

21. If I
could have one day of feeling normal again I would: Go on a hike in the
Mountains.

22. My illness has taught me: God is with
me, even through the tough times.

23. Want to know a secret? One thing people say
that gets under my skin is:“You don’t look sick”

24. But I love it when people: talk to me
about other things beside my illness.

25. My favorite motto, scripture, quote that gets
me through tough times is:Philippians
4:13 ~ “I can do all things through
Him who strengthens me.”

Joshua 1:9 ~ “Have I not commanded you? Be
strong and courageous. Do not be afraid; do not be discouraged, for the LORD
your God will be with you wherever you go.”

26. When
someone is diagnosed I’d like to tell them: It will get better, don’t
despair. It really, really does!!

27. Something that has surprised me about living
with an illness is: How self conscious I felt using a cane and
handicapped parking sticker, when I was at my worst. It was hard for me to let people “see” my
weakness. I don’t use these things now.

28. The
nicest thing someone did for me when I wasn’t feeling well was: Give me
a Kindle when I no longer had the strength to hold open a book.

29. I’m
involved with Invisible Illness Week because: I feel empowered by helping others know they are not alone,
and to spread awareness of adverse reactions to Fluoroquinolone antibiotics
that lead to chronic problems.

Friday, August 19, 2011

The months of July and August pulled a fast one on me…the old bait-and-switch. Our family made it through the month of July relatively unscathed this year. Well, except for the Suburban. July has historically been our "bad luck" month, but the first of August hit me with several hard punches and hard they still are. I have been diagnosed with diverticulitis, and if any of you have ever had this, you know it is far from fun. The restrictive diet, along with the antibiotics, in itself can be hard on a healthy body, and even more on one already weakened. If that was not enough, the CT scan to diagnose the diverticulitis found a suspicious “spot” on my left ovary, right near the diverticulitis. That of course, led to an ultrasound which confirmed a dermoid cyst, which is actually classified as a tumor (cystic teratoma). They are congenital, meaning I have had it my whole life. It most likely still is slow growing and benign. Of course, it will still have to come out, but there is no rush.Now I know some of you are wondering if this is related to my Levaquin reaction. Well, the dermoid is definitely not, since it is congenital. The jury is still out about the diverticulitis. I do know it is often genetic, and it does run in my family. I also have a long history of digestive problems since my pre-teen years. However, after my adverse reaction, I feel everything about my digestion changed. It was not the same at all. Also, a previous colonoscopy pre-Levaquin showed nothing. There was no evidence of diverticulosis, the precursor to diverticulitis. So, I do feel I was more than likely “prone” to this based on my history and family history, but I also feel the changes caused by the Levaquin precipitated it.For now I am on a very restrictive diet for the diverticulitis, and the antibiotics Bactrim and Flagyl. I fought hard against the Flagyl, since it is also known to cause severe side effects, and is contraindicated for those with Peripheral Neuropathy. However, I was not improving. So after many tears, I said a prayer and swallowed the pill down. So far, it has only mildly increased my PN symptoms. This has shown me that I can survive antibiotics post Levaquin. I am waiting to see my OB/GYN on how to proceed with the dermoid. I do not see him until late September. He more than likely would not be able to do anything about the growth anyway until I have healed from the diverticulitis, which usually takes 6-8 weeks. On that note, I would like to put out a small request; I hope You are listening up there. Would September and October possibly be kind to me, because the July-August “bait-and switch” has just about done me in. Thanks for reading.

Recent Breaking News!!

ATTENTION: Fluoroquinolone drugs have been linked to numerous and widespread devastating and systemic side effects. Toxic side effects to the Central Nervous System, Peripheral Nervous System and the Autonomic Nervous System have been reported. If you have taken Levaquin, Cipro or Avelox and experienced any of these or other side effects lasting longer than 3 weeks after discontinuation of the drug, please contact the FQ Lawsuit Registry. One experienced Southern California law firm would like to represent you regarding your adverse drug reaction. In order to be considered for compensation for your injuries, in this class action lawsuit, you must fill out the information form provided. No information will be shared outside the legal firm. This is time sensitive. Law firms gauge interest by numbers of responsive victims affected. These forms need to be submitted by Thurs Sept. 13th. Please take 3 minutes and register NOW in order to obtain financial compensation.https://docs.google.com/spreadsheet/viewform?formkey=dGtXRnVhcjZXRzU4VGh6OEcwckJRX2c6MQ&fb_source=message

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Alice

'I wonder if I've been changed in the night? Let me think: was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I'm not the same, the next question is 'Who in the world am I?' Ah, that's the great puzzle!'"- Lewis Carroll, Alice in Wonderland, Ch. 2

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All information is based on my own personal experience and is for informational purposes only. Please be aware these are treatments that I have tried under doctor supervision and advice. I am in no way indicating that these are for everyone. Please discuss all treatments with your physician.

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